Guidance on your path to gluten free living.

Portrait of a Gluten Sensitive Family

My saga of gluten woe began in 1975, but in reality years before. It is not unlike the so many stories that I have heard or read about, with the suffering and the searching for a diagnosis. Yet, my journey has some twists and turns that make it unique. There are lots of bits of information that will help you with the new understanding of gluten sensitivity. In the process, you will understand why my blogs are the way they are.

It began with a stomach virus that swept through our family of five with a quick vengeance. We all recovered in 24 hours, except for our one year old baby. Her digestion did not return to normal but persisted with intermittent diarrhea. I sought the advice of our pediatrician and he prescribed an antidiarrheal medicine that was opium based, although I didn’t realize it at the time. It didn’t really help that much and some days she was worse and some days better, with or without it. Thankfully, I instinctively used it sparingly.

I found that she improved for a time when I eliminated milk from her diet. Still, she continued to get worse overall. Thinking I should optimize her nutrition, I emphasized organic foods and grew my own sprouts and baked whole wheat bread….. Her immune system was now weakened and she began to have strep infections which led to a cycle of antibiotics plus medicine for the diarrhea that inevitably worsened from the antibiotics. In spite of “normal” check ups, over the next months her condition became frightening to me. In addition to a very distended abdomen and frothy diarrhea, she was now extremely irritable and spent some part of her days screaming and crying inconsolably. She could not bear to have her hair combed, so I lovingly combed it with my fingers. Her smile was gone. “I think she is becoming autistic,” I whispered. “I have to find an answer.”

On the way to the doctor’s appointment, I mentally rehearsed what I was going to say, but I never could have anticipated our pediatrician’s reply. The scene that day left me in shock for weeks and emotional to write about, even now. After observing her behavior, he glared at me and said, “Your child is not autistic. The reason she is acting this way is because you are not disciplining her!” I was speechless, never even mentioning the frothy diarrhea. I left with another script for an antibiotic and opium. We were in gluten hell.

On the way home, I stopped at the drugstore to fill the prescriptions and I asked the druggist what was in those drugs. He handed me an info sheet since it was before they included one in the packaging. My eyes filled with tears as I read the warning: “Contains opium. Do not use over a long period of time…..” I was horrified. They had given my baby opium over a long period of time!!! Thank God I had not used it very often. I tore up the prescription and fled the pharmacy with a fire to find the answer.

In that moment of desperation, I thought of Dr. Curtis Dohan as if his name were dropped from above into my consciousness. Dr. Curtis Dohan was an MD who worked where I had worked as a lab tech in biochemistry research. He was investigating the high incidence of celiac disease in schizophrenic patients. I had not paid much attention to that facet of his work, but on this day I had an epiphany. ( Note: Opioid fractions in gluten grains cause addiction and brain fog. With any addiction there is “denial” when confronted with the possibility that a favorite substance may be harmful. You simply can’t hear the truth.) “CELIAC DISEASE!!! She has CELIAC DISEASE,” I cried out. I rushed home and called Dr. Dohan. His immediate and frantic reply was, “Take her off from gluten now!” And I did and in three weeks she was better.

She was scheduled for an intestinal biopsy, which was, and still is considered by many, to be the gold standard for diagnosing celiac disease. As I sat in the waiting area, I continued to question why she needed a biopsy. “She is better,” I thought, “Isn’t that enough? If this diagnosis required medical treatment, then maybe, but the answer is to be vigilant over her nutrition.” The longer I waited, the less I wanted her to be subjected to a biopsy. She was finally feeling better after months of being sick. Besides, I didn’t even know what the risks of the procedure were and she had to have general anesthesia. I wondered how accurate the biopsy would be. What if they don’t snip a damaged area? Most importantly, what if the results were negative, would I go back to feeding her gluten? I stepped up to the receptionist and announced, “I changed my mind” and we left. We never did the biopsy and she never needed one to prove what she had. The diet proved it.

At the time, and even today, many “experts” believed that as long as there is no diarrhea, some gluten may be ingested to tolerance without consequence. We blindly followed that misinformation and later found that the effects of gluten can be far reaching beyond the intestinal tract and without the obvious symptoms. Never, never, believe the above bit of twisted information. There is no such thing as “low” tolerance. There is only “no” tolerance.

We will now fast forward to about 10 years ago when our daughter began having some frightening symptoms. Our very compassionate doctor told me he cried after he examined her. “Mrs. Thomas, I believe she has MS,” he said sadly. My second epiphany came a short time later. “What if gluten can cause neurological symptoms without the symptoms of celiac disease?” I thought. I encouraged our daughter to be 100% gluten free even though she did not have the former symptoms of celiac disease. The symptoms of MS disappeared, but it was not until we learned the lesson of “contamination.”

At about the same time, our daughter’s beautiful three year old son began showing signs of celiac disease. It arrived insidiously following an intestinal virus, little by little claiming its unwanted place in our family again. Initially, I started to have brief flashbacks as I contemplated our look alike grandson. Then the picture became crystal clear and unmistakable. Our grandson had celiac disease. I had thought celiac disease was “rare” so I was devastated to see it again in our family and it was the last thing I wanted to believe. So the second member of our family became gluten free and he got better. Totally better, in fact, but we were about to learn another lesson.

Our grandson was very sensitive to gluten and in spite of my best efforts, he kept getting “contaminated” at my house. So I cleaned out every speck of gluten, threw out my toaster oven and restocked my kitchen shelves making my home a gluten free safe place. We began investigating food companies and to our horror discovered that many of the GF food lists, even those printed by celiac disease associations, did not take into account contamination during processing or that the ingredients in the products from other sources might be contaminated with small amounts of gluten. We realized that if our immune system can recognize sub microscopic viruses, it can hone in on very small amounts of gluten, even as little as 20 or 30 parts per million. We also realized that eating out in restaurants was like playing Russian roulette. (This appears to be changing, now.) We perfected the definition of “gluten free” and accomplished a very pure gluten free diet. It made all the difference.

In addition, I decided to be gluten free too, so I could walk the same road with my daughter and grandson and be a loving and constant support for them. I did this even though “I had absolutely no” symptoms of GS or so I thought… The first thing that happened was I noticed my brain fog was clearing and I began to see things differently, more realistically as I moved out of “Glutenville.” Secondly, my body aches disappeared and my restless leg syndrome was gone. I could now go to the bathroom regularly and the frequent flu like symptoms disappeared, too. I woke up every morning refreshed and alert. I now was thinking clearly enough to be hot on the trail of a new paradigm.

I discovered a book titled “Dangerous Grains” by Ron Hoggan and Dr. James Brayly (see Resources). I digested the book in one day and it confirmed everything I had learned from my experience and more. The light had dawned. There is more to this gluten thing than celiac disease! I was in the book and I knew I was gluten sensitive and so were other unknowing members of my family.

At this point there were three of us who were gluten free, but one more would soon be added. After our middle daughter’s first baby was born, our daughter began to lose weight at an alarming rate. Once again, no symptoms of classic celiac disease were present, except for loss of weight. Instead of diarrhea, it was constipation. She decided to go to her doctor to request a test for gluten sensitivity. “But you don’t have the symptoms of celiac disease,” the doctor responded in a rather bemused and condescending way. She refused to order the blood work. A short time later, I found out about Enterolabs. (see Links). Her test results were positive for both gluten sensitivity and casein allergy. She became gluten free and her weight normalized and she got better.

That is what gluten hell looks like. It is the portrait of a gluten sensitive family. Our portrait looks much different today because we are gluten free and healthy now.

As I sat one day in quiet contemplation I had my third epiphany. I began reminiscing about my life’s path and how truly blessed I am. I wondered what would have happened if I had not known Dr. Dohan and about the amazing inner guidance that led me to work in that research lab. I grappled with the mystery of gluten sensitivity and gluten’s insolent masquerade as the staff of life. I pondered its addictive nature and the reasons there is so much resistance to looking at the picture of gluten syndrome.

My most dramatic revelation came while looking backward in time at my family portrait. My father had been a “sickly” child and his last days were spent battling rheumatoid arthritis, an autoimmune disease. “I think it has to do with something I am eating,” my dad would often remark. He must have been intuitive, but who would have guessed it would take forty years and the next generation to figure out exactly which food it was.

As thoughts about the events surrounding my older sister’s death forced their way into view, I asked myself in quiet desperation, “Could it have been?” She had died before I was born and I grew up with a lingering and silent grief in our household. I began to cry softly. Joanie had died at the age of fifteen months of severe, “intractable” diarrhea following a flu. It was in 1940 and they simply didn’t know.

Margery Thomas

Disclaimer: This is my story and my opinion. It is not meant to advise, diagnose or treat a medical condition. Please seek competent medical help for medical conditions.

Hi! I am Karla’s friend from college. Karla told me about your blog… very interesting. My daughter had a test done (scope) and they told her she did not have celiac disease. Because she had a number of alarming symptoms, we then had a food sensitivity test done by a company in Florida. Many of the foods she is sensitive to are the same as what a celiac diseased person would be… go figure! After a dramatic change in her diet, she is much better! I love your blog! I’ll check back again!

Hi Marcie! Karla told me she emailed you my blog address. Thank you for visiting my site and your kind comments. I am thrilled your daughter is better. You are very, very blessed to have found the answer. I wish you all the best.

Margery
Even though I knew most of the beginning of your testimony,I enjoyed reading it . Your openness to share this is a blessing and an education for many. I can feel some of your sadness in, wishing they could have known what you know today. Maybe that is how God birthed in your heart to reach out and help others. I for one greatly appreciate all you have done and continue to do that helps me have a renewed life. Thank you Nancy P